MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Sunday, 27 February 2011

Something nice happened to me yesterday. The story begins on Thursday. Jane was working at Cornerstone, while I was being interviewed by Edward at home. When he'd finished, Bryan fetched the lift down and helped me in to my wheelchair, and then saw me out on my way for a coffee at Cornerstone. Two things you should know: I was in a hurry, and I'd stuffed my mobile into my pocket just in case. My physio, Lesley, tells me I should always keep it on me when I'm on my own, in case of emergency.

It wasn't until Friday that I discovered my phone was missing. Nowhere in the depths of my pocket nor in cracks of my wheelchair.... On Saturday Jane was back in Cornerstone, but it hadn't turned up there. We concluded it must have been bounced out on the bumps in the snickets between here and there. Then later Rachel phoned. Someone had called her, using my SIM card. The caller had my mobile and lived just over the road.

So Jane rang Priscilla, and went round with chocolates. Apparently her young son had found it under a bush. She brought it home in a carrier bag from a shop on the Cowley Road called "Honest Stationery"! Appropriate, somehow. Isn't there a saying, "A good deed in a naughty world"?

Friday, 25 February 2011

Yesterday I was interviewed by Edward, a local sixth-former, about my views on euthanasia and terminal illness. It so happened that the morning news had carried an item about research based in Belgium and France about Locked-In Syndrome, that terrible condition often caused by a massive stroke. I wrote about one sufferer in I Choose Everything, young mother of two, Michelle Wheatley, who lived in Offerton, next to Hazel Grove, where we lived for three years. She was in Stepping Hill Hospital for a year, and is now in a nursing home. On her website LIS is explained with clinical detachment: "Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others through coded messages by blinking or moving their eyes, which are often not affected by the paralysis."Michelle Wheatley's website She is utterly dependent on others for everything. She has just last month convinced Stockport NHS Chief to let her try an intensive course of rehab physiotherapy - but it was a struggle.

I suppose the most famous example of it was Jean-Dominique Bauby, editor of Elle and author of The Diving Bell and the Butterfly. The other sufferer who's hit the headlines is Tony Nicklinson, who wants the legal right to assisted suicide. He's been like it for 20 years, and understandably tired of the whole thing. He once said to me that while I had a death sentence, he didn't even have that. He was interviewed on the 'Today' Programme about the British Medical Journal Open article on the research. The research was carried out among members of the LIS association of France. It was not commissioned (i.e. by an interested party), and, as all good academic research, it was submitted to external review. If you read the article, you will find it very objective and statistically sound. Its astonishing conclusion was that the majority of the 65 respondents (72%) described themselves as "happy" while the minority (28%) counted themselves "unhappy". They were asked about end of life issues. While 12 of the 16 (75%) "unhappy" had envisaged euthanasia, only 19 (44%) of the "happy" had ever thought of it, and of the whole sample, both happy and unhappy, only 8% often had suicidal thoughts. In other words, the over-all attitude of people with LIS is much more positive than from the outside we would have imagined.

So how do you dismiss research like that? Well, as far as I could tell, Tony Nicklinson's main criticism was that it was carried out in France, "which is a Catholic country" where they must fear eternal damnation if they commit suicide. I have a feeling that France became a secular state after the Revolution. But even in the research project the proportion who described themselves as religious (which of course covers a multitude of sins!) was a remarkably high 70%. (I wonder why in that group, by the way. Churchgoing isn't 70% in France, from what I've seen.) More remarkably the proportion among the "unhappy"was 81%. In other words "religion" was hardly an escape. As the article puts it: "The happy and unhappy groups did not differ regarding socio-demographic, physical and functional variables including religion, living at home or with a partner, income, education, physical care and feeling comfortable in the company of others. Depression, suicidal ideas, consideration or wish for euthanasia and the wish not to be resuscitated in case of cardiac arrest were significantly more frequent in the unhappy group." I suspect Dignity in Dying (formerly the Voluntary Euthanasia Society), or whoever briefed Mr Nicklinson, conveniently forgot those sentences.

The conclusion the researchers drew was: "Our data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic (anxiety relieving) therapy. Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed." BMJ Open article Locked-In Syndrome

My friend, Louise, who works with a charity for the elderly commented: "Yes: three news items in a very interesting juxtaposition today. One was the thousands of days spent needlessly in hospital by the elderly because of lack of care available outside; the second was the proposal by the regional NHS Chief that patients be given the choice as how they could die, and the third was that even the most severely disabled people would not want to choose to die because most of them were happy." And she asked the disturbing question, "If they were in hospital, would they feel obliged to choose how they should die?"

It's easy to make assumptions that people like Michelle Wheatley are exceptions to the rule. In fact now we know they're not.

Thursday, 24 February 2011

I realise I've apparently not been aware of the historic events taking place in the North Africa and the Middle East. My Facebook friends will know, however, that I did sign up on the Cancel the Bahrain Grand Prix group. I hardly think the 143 of us made a great impact on the decision which was quite soon made! In truth the domino succession of protests starting from Tunisia has been extraordinary to watch, and to understand. The factors of militant Islam's presence in the region and Israel in the middle are what contribute to the sense of international moment to the pictures on TV. These are not mere domestic upheavals. They could involve us all.

At the height of the protests in Cairo and with a new government in Jordan, Andrew White, vicar of Baghdad, pointed out the intriguing prophecy of Isaiah 19. 23-25: 'In that day there will be a highway from Egypt to Iraq (Assyria), and Iraq will come into Egypt, and Egypt into Iraq, and the Egyptians will worship with the Iraqis. In that day Israel will be the third with Egypt and Iraq, a blessing in the midst of the earth, whom the LORD of hosts has blessed, saying, "Blessed be Egypt my people, and Iraq the work of my hands, and Israel my inheritance."' And he commented: 'Today it is beginning to happen. We do not know what will happen next. I can only say the words at the beginning of each service the “The Lord is here and His Spirit is with us." Keep your eyes on Isaiah 19.'

Vicky Beeching

Talking of Isaiah, I've been thinking about churches and worship recently, and I came across an interesting chapter in Micah's Challenge written by Tony Campolo. It was about Isaiah 58. He points out that worship not only reflects but also shapes theology; and he asks: "Will this new kind of worship music mould our theologies so that our religion in the years that lie ahead will be likened to that of the people of ancient Israel, devoid of social justice concerns and, therefore, unacceptable to God? Will we have worship music that has Christians... with uplifted hands singing love songs to God, while failing to 'seek justice, correct oppression, defend the fatherless, and plead for the widow?'"

There is a great YouTube clip where Vicky Beeching, who studied theology under my brother in Oxford, introduces her new worship album, Heaven Invades. I think she has it just right.Vicky Beeching talks about worship

Sunday, 20 February 2011

I got quite emotional this morning when I heard the beautiful voice of my late cousin on BBC Radio 4. It was on Sunday Worship with the theme of The Healing of Fear. Michael Ford played part of an interview he made last September with Grace Sheppard, as she faced her death from cancer. She talked about the power of gratitude, developing a habit of thankfulness for all the little things, pictures, flowers, a drink, which mount up. "To me, they're a gift from God... and it helps you do the hard bits."

from Chester Diocesan News

She spent her last days in St John's Hospice, hovering between two worlds. "Despite difficulties with her breathing, Grace told Jenny (her daughter) that dying was nothing to be afraid of. In fact, she felt distinct excitement, and could discern something wonderful about what was going to happen. In the consoling atmosphere of the hospice, Jenny felt that dying was no more fearful than being born."

My good friend Rob drew my attention to this year's Richard Dimbleby Lecture, which was given on Tuesday by Michael Morpurgo, the prolific children's author. It's entitled 'Set our Children free'. It touches on a number of issues which are dear to my heart, as readers of this blog will be aware. Sadly I can't find a script on line, and there are only two days left to hear it on iPlayer. But it's well worth the listen. I found myself cheered as I listened to such a creative man talking with great wisdom. 35th Dimbleby Lecture: 'Set our Children free'. Morpurgo talks, among other things, about asylum seekers, the Middle East, education, libraries - and even about educational farms. It's a good deal better broadcasting than 95% of the usual fare.

Talking of which another friend, Sally Hitchiner, put this rather shocking fact up on Facebook yesterday: 'checked out the Newsround website to send links to the children leading prayers in our All Age service tomorrow and was surprised to find it's REALLY mindless... Lady Gaga, the Brits, Bieber Fever and at the bottom in "other news" (with "Polabear visits dentist") a small feature on the small trouble in Bahrain - 25% of which is about the possibility of it cancelling the grand prix!'

Michael Morpurgo didn't comment on this, but he did in passing refer to the BBC's Mission, which is: "To enrich people's lives with programmes and services that inform, educate and entertain". As their flagship news programme for children, the sample of Newsround that Sally found seems to me simply to fail a generation. As she went on to comment: 'I remember it being great when I was a child - they sometimes had an element of "Something really bad happened today in the Middle East but our soldiers are trying their best to make sure everyone is ok" but at least they covered the issues that mattered... They're doing children a real disservice in suggesting that all they're interested in is celebrities and lollipop ladies!' (And I need to say, Sally's not some nostalgic middle-aged fuddy-duddy. She's young, and wonderfully hip.)

On a lighter note, I enjoyed this exchange by children of friends of ours:Daughter : "You know when they are old and past it...."
Son : "Yes...."
Daughter : "Well, if I look after mum, you could look after dad."
Son : "That's not fair! How come you get the one that does the cleaning, the cooking and the shopping, while I get the useless one!"You and me also, old pal!

Tuesday, 15 February 2011

Yesterday I was contacted by the Guardian asking if I would like to do a piece for their Comment is free column. Sadly as you'll know I was out having a romantic lunch with my Valentine - not sad, I hasten to add, because of enjoying Jane's company, but merely because by the time I'd returned to my emails they'd found another blogger to write it instead! Fair enough: speed is all in the world of daily newspapers.

They'd wanted a piece following on from a crie de coeur piece headlined

'Life not worth living' for disabled people facing benefit cuts

Campaigners say government plans to end automatic right to state support for independent living is causing many to despair . Read full article

I was surprised on reading the article to discover that it was about the government's Commission on Funding for Care and Support, the Dilnot Commission for short, after its chairman, Andrew Dilnot, the former head of the IFS (Institute for Fiscal Studies), and that the consultation period was ending this week. Oh well, I thought, because by now my brain was running on overdrive, I can at least make a submission to the commission. So I was even more surprised on going to the Commission's website to discover, at the end of 22 pages, that in fact the deadline for submissions was midnight on 31st January. "Darnit!" I thought. "I don't remember that ever being publicised." So I googled it, and I couldn't find a mention of the deadline, nor even an invitation for submissions, in the news media. Clearly the disability and aged groups had been contacted. But were they really interested in what individuals thought? Not everyone is represented by a group. And ultimately, one hopes, it's about the care and support of individuals.

It so happens that we know Andrew Dilnot. In fact one of our children had digs at the top of their house once. I can't think of anyone in whom I'd have more faith to head up that commission - brilliant, humane and understanding of needs. I gave a cheer when I heard he'd been appointed chairman. But his task is immense. Originally the government gave them a fourfold remit: sustainability, fairness, choice and affordability. The Commission negotiated a fifth: ease of use. If you've been following Michael Sandel's excellent series on Justice on BBC4, you'll recognise that these are all utilitarian considerations. Even "fairness" is defined as "for individuals, families, carers, and the wider society". In other words there's a calculus to be made between the stakeholders' interest and "the wider society", reinforced in two other criteria, sustainability and affordability. Which of course are very necessary considerations for the "state" to make. But there's a question to be asked first - which is, where do we place our priority in deciding what we can afford? Ultimately where's our value-base? What do we hold as non-negotiably good in our society? That is what should determine our spending/taxation priorities.

That does mean asking some very hard questions. Of course it does. For example, is the free market economy more important than the compassionate society? Is subsidising high art a priority? Free museum entry? Financing high profile sports events... Tax breaks for billionaires, hedge-fund managers... Protected pensions for MPs...? What does fairness mean? Does it mean everyone being treated the same by the state? No winter-fuel allowances and free bus passes for the elderly? No child-benefit for those feckless enough to have babies? No subsidised bars for MPs? No allowances for the disabled?

The oldest law code I'm familiar with sets the highest priority on protecting the vulnerable: "Cursed be anyone who perverts the justice due to the sojourner (alien), the fatherless, and the widow" (Deuteronomy from the Bible). "You judge a country, and its institutions, by the way it deals with the most vulnerable - hard to argue with that," said John Humphrys on the Today programme this morning. He was introducing a discussion about the report of the Health Service Ombudsman on bad examples of care for the elderly in the NHS. Later, Professor Raymond Tallis, once of Manchester University, warned against the business model that had permeated the caring professions, so that "people only value the things that can be counted". He went on to make this point, "There's a problem more broadly in society. What do we value in society? We value glamour. What is the least glamorous thing to do, but what is the most deeply important thing to do? It is actually hands-on care. I think that society at large devalues hands-on care, and I think that is another implicit pressure." I suspect I disagree with the professor on some things, but here I reckon he's on the mark.

"The most deeply important thing to do" ... is actually hands-on care. That's the opposite of letting the vulnerable sink or swim, while the rest of us in SS Great Britain head for secure financial ground, eventually. It's not hauling up the lifeboats and saving the life-rafts in case we might need them later. Neither is it thanking God that we have our own little (or considerable) life-rafts set aside should the worst ever happen to us. "You judge a country... by the way it deals with the most vulnerable." Let's not argue with that. And, Andrew, should you happen to be reading this, could you just make that the starting place for your policy-making?

Monday, 14 February 2011

Valentinus, a Roman, according to one story, was executed on 14th February, 269 AD, for refusing to give up his Christian faith. He left a farewell note, the story relates, for the jailer's daughter, who had become his friend, signed "from your Valentine". That seems to me highly improbable and hardly a reason for making him a saint 200 years later. In fact he was honoured as one of those "... whose names are justly reverenced among men, but whose acts are known only to God."

Anyway, poor man, he's now become the pretext for a celebration of human love which, of course, has been well and truly cashed in on (losing the "Saint" bit on the way). I have to admit I'm not immune from it. A couple of weeks ago I bought a tasteful card which told Jane just what I thought of her - and then to celebrate for lunch we drove out through the spring sunshine to Aston Pottery, and chomped through our massive baps gazing into each other's... opposite each other!

Listening to Desert Island Discs on Friday, I heard Howard Jacobson, winner of the 2010 Booker Mann prize, talking about why he liked being married (he's been married three times). I loved this part of his answer: “I think I need to be looked at with love to be certain I’m there. Maybe I need to see myself in the beloved’s eyes, to see a nicer version of myself than is either actually the case, or than I fear might be the case.”Kirsty Young “So it’s that idea that if there’s someone that you regard as a good person regarding you well then you can’t be all bad.”“Absolutely that; it’s as if I can’t trust my own version of myself.”

Tuesday, 8 February 2011

"The very existence of libraries affords the best evidence that we may yet have hope for the future of man"—T.S. Eliot"My education was the library. I had to read indiscriminately and all the time, with my eyes hanging out"
- Dylan Thomas"I have always imagined that Paradise will be a kind of library" - Jorge Luis Borges "A library is a token of, nay, a trophy of grace" - Martin LutherI imagine our local county councillors, Mr Keith Mitchell, leader of the council and responsible for, inter al, community leadership, and Ms Judy Heathcoat, responsible for, inter al, libraries, adult education and social inclusion would say to these great men, "Yer wha'?" More specifically, perhaps they'd say: "Mr Eliot, I don't get your drift any more than I understand your poetry - what I've read of it.""Pipe down, Mr Thomas; in our new world you'd be in danger of a Criminal Behaviour Order (new name for Asbo) the way you carried on.""Senor Borges, there's no such thing as Paradise, but even if there were, we wouldn't have books, just Sky TV.""Herr Luther, we do not live in a time of grace!"

I say this because sadly they've announced that our local library is up for the chop, and one suspects that no amount of rational argument or local pressure will change their minds. It is of course solely an economy measure. But as Dame Elisabeth Hoodless rather awkwardly pointed out - and she's not exactly a young radical, aged 69, and retiring as Head of Community Service Volunteers after 36 years - it is at odds with the PM's dream of the Big Society. "Once you close a library there is nowhere for a volunteer to help.... Few people want to be responsible for the library. Most people want to feel there's an expert on the premises. They are quite happy to issue and re-shelve the books, but taking the final responsibility is a bit more than most people want to do."

So I buzzed myself off the the Read-In on Saturday morning at Grove Library and signed to petition. Its closure does seem an odd proposal at a time of impending local development. Mr Mitchell, a hale and hearty fellow, tells us we can just pop on the bus to Wantage and use the library there. It will cost you nothing after 9 am, he tells us, if you're over 60. But what about if you're a mum or dad with young kids? What if you're unemployed as well? And what about if you're disabled or in a wheelchair, Councillor? Just "take the bus"?

When we moved here, one of our first outings was to the Library. Being Grove, getting there was straightforward and on the flat. The library itself was very disabled friendly. Here was one expedition I could easily make on my own - a little bit of independent living. While there on Saturday, I was reminded of the benefits for Disabled Borrowers, such as borrowing books, most dvds, audio books, music cds and language courses free of charge. Reserving books etc is cheaper; and you don't get fined if you overrun. A great facility for the disabled! I don't know how many disabled live in Grove. I read somewhere that over one in ten of the working population are disabled - and obviously the proportion among the elderly will be higher. The 2001 census gave Grove's population as 7845.

There are plans to build 2,500 new homes here. The library's not huge, as you can see, but without doubt it's both an amenity for the present and an investment for the future. Closure would be both myopic and philistine. Once it was closed and bulldozed to the ground, like the building next door, would a new one ever be opened for Grove - no longer 'village', but a town-size? What do you reckon?

Monday, 7 February 2011

Why do broadcasters (eg. on BBC Radio 5 Live) say, "See you same time tomorrow", or "in 14 minutes", in the case of a recent trailer? No, you won't, Mr Campbell, Mr Livesey. That's just stupid. You won'tseeus. We might hear you. You could say, "I'll be back...," or, if you insist in being more chatty, "Till tomorrow, same time." We need an equivalent of the German "Auf wiederhören".

Why do some radio forecasters emphasise odd unimportant words? "Winds gusting TO forty miles an hour in the South AND West..."

And why do so many journalists persist in demonstrating their paucity of vocabulary by using the word "iconic" - even after I mentioned it before on this blog? I was once told that people used bad language because they were too lazy to find a more vivid or accurate word. I'm inclined to think that "iconic" is the new swear word. "That's an iconic Torres goal!"

I suppose I'd better mention the Top Gear Mexican fiasco. Not that I watched it. I must say I have to agree with Steve Coogan's verdict on the lads' uncouth racial insults.'There is a strong ethical dimension to the best comedy. Not only does it avoid reinforcing prejudices, it actively challenges them. Put simply, in comedy, as in life, we ought to think before we speak. This wasn't one of those occasions. In fact, the comments were about as funny as a cold sweat followed by shooting pains down the left arm. In fact, if I can borrow from the Wildean wit of Richard Hammond, the comic approach was "lazy", "feckless" and "flatulent".'Steve Coogan on Top Gear

Talking of cars, which Top Gear is supposed to be about, I see I could get some shares in our local Formula 1 team, Williams F1, on 2nd March. I'm not sure how good a short-term investment it would be, but at some point it must come good, surely...?

Tuesday, 1 February 2011

Here we are again, out the other side of 'the sermon'. My audience nearly had to do without any visual aids, as another disaster befell my poor old laptop in the form of a sprinkling of elderflower cordial, resulting in the blanking of my screen before I'd put the powerpoint on my memory stick. However with a torch shining on the screen the transfer was eventually achieved. Phew! People seemed encouraged at the end. I talked about the deep link between Sunday worship and weekday life.

Before I rush on, however, I must go back to Saturday afternoon when we had the first MNDA meeting of the New Year at the Pear Tree Holiday Inn. What a good time! Sat next to my friendly 'herb farmer', David. First off we had a debrief on last year's International Symposium on MND/ALS (in Orlando) from the amazing Rachel Marsden, our local MND nurse coordinator, and heard about things like supra-glottal swallowing, compassion fatigue in carers and state-of-the-art green (environmentally) houses for independent living. After the break, his friend Dr Martin Turner gave us a presentation about Patrick Joyce, the incomparable optimist, who's an artist with MND. His aim is to paint 100 portraits of people who inspire him before he dies. Lovely young father, with an impish sense of humour and a gutsy determination. We were told that he's presenting an exhibition of his paintings in Oxford's beautiful Natural Science Museum in April. Made me feel a bit inadequate, if I'm honest.

The best thing about the meetings, as I've said before, is meeting folk. This time it was a new family, of whom their mum, Lorraine, was diagnosed with MND last year. Her son, Matt, and four friends are running the Reading Half Marathon in aid of MND care and research on 20th March. Here's the team. They can be sponsored on http://www.justgiving.com/TeamDiddy.

Today's main decision was whether to replace my faithful friend, the laptop. Well, actually I made the decision last night and had second thoughts today. But now, "Alea iacta est," as Julius Caesar said, as he crossed the Rubicon. The die is cast. Norman tells me I've overused it - and he's probably right. I reckon a few more books are called for to merit the investment. So less waffle and more application.

I suppose that means less sport-watching. What a good thing we don't have Sky! Though Murray being walloped by Djokovic was on the BBC - I was spared that by my preaching engagement - phew! Big problem - the rugger starts again on Friday. Well, I suppose I am allowed weekends, aren't I? Oh, I almost forgot, by way of light relief, a visit to my gentle dentist this morning, who painlessly patched up my carious teeth. A special needs dentist, she's worth her weight in gold. And talking of different special needs, I hope you didn't miss Countryfile on Sunday when Adam the farmer went to visit Pennyhooks Farm. It's a farm which works with young people, giving them life skills and education, and where Rachel does some of her work. If you didn't you can see it 14 minutes into this: Countryfile including 'care farms'. I think it's impressive.